Living with MND

Living with MND

MND is a complex condition that requires a wide range of support and advice from a variety of health and social care professionals. It is a life changing illness and its rapidly progressing symptoms and the effects of them can be difficult for the person with MND and their family and friends to adapt to.

A recent study in Glasgow looked into the impact of MND on individuals and those close to them. Here is a summary of their findings:

  • control or the lack of control was the biggest concern for most. People wanted to be involved, consulted, informed in any decisions regarding their health, social care and support
  • many MND patients are cared for by informal carers like family members, and although this has many benefits the strain on families and loved ones can be immense
  • health care professionals have an important role to play in the care and support of MND patients and their immediate family. The study found that good care occurred when professionals worked together and communicated as a team
  • social care and support provided by local authorities can vary in quality
  • health care professionals acted as ‘Champions’ for the family and helping to coordinate services.

You can read the full report from the University of Glasgow here.

Initial Reaction

Watch this video for an example of how it feels to be diagnosed with MND.

Receiving a diagnosis of MND is a terrible shock and may generate all kinds of other emotions, including anger, grief, disbelief or denial. As traumatic as diagnosis may be, once a person knows why symptoms are happening, they can make informed decisions about their future.

Below, patients explain how they felt about their diagnosis

  1. Immediate reactions to diagnosis
  2. Experience of diagnosis

Planning care

A diagnosis of MND often means people have to re-look at their plans and how they live. MND is unpredictable and the progression is rapid in most cases. This can make the person feel out of control, causing stress and anxiety.

As the condition progresses, a person’s care needs will change and increase; they will need more support from those around them and coordinated care from a variety health care professionals.

More information can be found at Advanced Care Planning on the End of Life resource from the RCN.

Staying in control

MND can feel very isolating, making the individual feel disconnected from the world and people around them. Enabling the person to stay in control as much as possible, allowing them to make decisions can help to ensure they maintain a role in the co-ordination of their care. Although some cognitive limitations may occur, the individual almost always has the capacity to understand and make informed decisions about their care.

Maintaining independence

MND can rapidly affect a person’s ability to maintain their independence, however, by anticipating these changes and planning ahead, the person may be supported to remain independent for as long as possible. This support may include:

  • lifting aids
  • bathing aids
  • aids to assist with daily living
  • seating
  • disability advice and
  • access to grants if available.

It’s important to note that some services may be subject to means testing.

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